It has been a little while since I have been home so I wanted to give a little update on how I am doing. I am much stronger, that is so nice. A lot of the water which I came home with on my legs has left. I am still struggling with some other water weight which has been incredibly frustrating to me, but I am trying to be patient.
That is one the the reasons we are going to get rid of my primary care provider doctor. She does not seem to be addressing the water issue well. Plus there have been conversations and such where we have been convinced she is not all that she is cracked up to be. Lots of our recent encounters with doctors have also convinced us that I am a hard case and they just don't know how to handle that. That may sound kind of ridiculous, and perhaps like we don't know what we are talking about or being difficult, however this is not altogether new. I have experienced similar things before this. So hopefully the new primary doctor will be better. I am nervous we won't find anyone in Columbus that is willing to care for me well and is ready to have a patient with difficult diagnosis. I have my appointment with the new Dr. on March 3. She came recommended from the nutritionist's group and will work with his nurse practitioner but that doesn't means she is not also a quacko. I do want to get there to fund out and it feels far away because I will still need to visit the doctor I have for any issues which may come up till then.
Other than that, I am catching up on HGTV, Law and Order and any other mystery shows. What a total disaster. When I first got out of the hospital it was hard for me to read, I don't know what causes that, but now I have a book I have started as well Oogy. It is about a dog that should have been a fighting dog, refused, almost died, and how he has a good family now. Since we love dogs my mother in law and her friend brought these books over, and I am greatful. I am also cracked up that they made sure the endings were all good, but I am glad they did.
Sunday, February 20, 2011
Wednesday, February 2, 2011
By grace I am here, and home
During the night on January 21, we made our way yet again to the emergency room. It was evident that again the veracies were angry and bleeding. Little did we know this would be the biggest challenge yet.
Apparently I was done with being scoped and decided to fight the scope thing that goes down the throat. They also had decided to do many checks, I believe three scopes during my time there, and because I was already anesthetized I believe they kept me in that state, and also to ensure I wouldn't have breathing issues they inserted a breathing tube. Yeah, it got downright scary. I will have to say I can't recount anything really solid without consulting Craig. My experience was more of a trippy one. I hallucinated, I couldn't remember how I got there, thought I was dreaming in what I call the torture room (it was the room they removed the breathing tube or something), and I kept wondering where my family was. Then I couldn't speak when the tube was removed. I was quite whispery for a while, plus with the super drugs I was tired and not always able to communicate well.
I was in the hospital 12 days. I came home on Monday. I have some things that the hospital left me with, water weight and air from all the scopes but I hope to be getting some help with that soon. Physical therapy people are going to come to the house so hopefully they can help this to work itself out. For now I am pretty uncomfortable but I can pretty much move around as I want, not really doing anything but able to move which is a blessing.
I thank those of you who prayed while I was in the hospital and I thank you for any prayers that you may pray for me now. I have to say that I was overwhelmed at many times by the number of people praying, about what happened, and that grace was extended to me and my family during such a stressful time. I am still overwhelmed when I think of it all.
I know I need the healing hand of God on me because I am still working to relieve the pressure/stress the liver has on it. I also know that Jesus had much mercy on me and was teaching and working on my heart during the hospital stay. It is amazing how God makes his way known.
I wish to share more but it will have to be later I have to go and rest a bit, but again thank you for your prayers and support.
Apparently I was done with being scoped and decided to fight the scope thing that goes down the throat. They also had decided to do many checks, I believe three scopes during my time there, and because I was already anesthetized I believe they kept me in that state, and also to ensure I wouldn't have breathing issues they inserted a breathing tube. Yeah, it got downright scary. I will have to say I can't recount anything really solid without consulting Craig. My experience was more of a trippy one. I hallucinated, I couldn't remember how I got there, thought I was dreaming in what I call the torture room (it was the room they removed the breathing tube or something), and I kept wondering where my family was. Then I couldn't speak when the tube was removed. I was quite whispery for a while, plus with the super drugs I was tired and not always able to communicate well.
I was in the hospital 12 days. I came home on Monday. I have some things that the hospital left me with, water weight and air from all the scopes but I hope to be getting some help with that soon. Physical therapy people are going to come to the house so hopefully they can help this to work itself out. For now I am pretty uncomfortable but I can pretty much move around as I want, not really doing anything but able to move which is a blessing.
I thank those of you who prayed while I was in the hospital and I thank you for any prayers that you may pray for me now. I have to say that I was overwhelmed at many times by the number of people praying, about what happened, and that grace was extended to me and my family during such a stressful time. I am still overwhelmed when I think of it all.
I know I need the healing hand of God on me because I am still working to relieve the pressure/stress the liver has on it. I also know that Jesus had much mercy on me and was teaching and working on my heart during the hospital stay. It is amazing how God makes his way known.
I wish to share more but it will have to be later I have to go and rest a bit, but again thank you for your prayers and support.
Saturday, January 15, 2011
Just another day...
Hello again! I have thought I am waaaay beyond overdue for updating the blog. When I opened it up it is definitely true.
Let's see, November and December. In a brief synopsis we have been skipping around on drugs, with the explanation being mixed results. That's been frustrating. So I am to go to the oncologist on Monday hopefully I will get a newly approved chemotherapy drug for people who have had a few different drugs during their cancer treatment.
In December I started seeing a nutritionist as well. We were led to him through different friends at our different work places so that is neat. He has a pretty interesting theory going on that the body needs a particular amount of nutrition to be healthy, and also to make the chemotherapy be effective. That sounds quite positive to me since there has been a mixed response, and I have been on chemotherapy treatments for a long time so logically that made sense to us. I am still working on taking all of his supplements, by the time I am at the level he wants I think I will be taking handfuls of pills a day.
Let's see, what else? Really I just beg for your prayers for my liver it has been temper mental, fluctuating in function, contributing to the drugs being confused. The liver getting happier is now a key part of the healing process to continue.
I think that this whole experience for those who are watching, waiting, can become just the way life is. I admit I find that to be often true for me, life being all doctors, appointments, drugs, phone calls, questions, and I can't remember what it was like to not have to remember all the appointments and all the drugs, and what it was like to comb my hair. I don't even think I ever took a multi vitamin before cancer. Weird life. So I am saying I can understand if you are weary with me with these issues, with the same old, same old. But I am asking if you remember sometime this week, ask Jesus for good things for my shot up old liver, and that he bless the doctors, drugs, and advice I have received and am using now, and that we can see positive results and quickly.
Let's see, November and December. In a brief synopsis we have been skipping around on drugs, with the explanation being mixed results. That's been frustrating. So I am to go to the oncologist on Monday hopefully I will get a newly approved chemotherapy drug for people who have had a few different drugs during their cancer treatment.
In December I started seeing a nutritionist as well. We were led to him through different friends at our different work places so that is neat. He has a pretty interesting theory going on that the body needs a particular amount of nutrition to be healthy, and also to make the chemotherapy be effective. That sounds quite positive to me since there has been a mixed response, and I have been on chemotherapy treatments for a long time so logically that made sense to us. I am still working on taking all of his supplements, by the time I am at the level he wants I think I will be taking handfuls of pills a day.
Let's see, what else? Really I just beg for your prayers for my liver it has been temper mental, fluctuating in function, contributing to the drugs being confused. The liver getting happier is now a key part of the healing process to continue.
I think that this whole experience for those who are watching, waiting, can become just the way life is. I admit I find that to be often true for me, life being all doctors, appointments, drugs, phone calls, questions, and I can't remember what it was like to not have to remember all the appointments and all the drugs, and what it was like to comb my hair. I don't even think I ever took a multi vitamin before cancer. Weird life. So I am saying I can understand if you are weary with me with these issues, with the same old, same old. But I am asking if you remember sometime this week, ask Jesus for good things for my shot up old liver, and that he bless the doctors, drugs, and advice I have received and am using now, and that we can see positive results and quickly.
Thursday, October 28, 2010
What could be the worst side effect of them all?
I have had terrible pain which kept me awake at night, super dry skin, a terrible rash, my hair has fallen out (does anyone feel sorry for me yet?), low blood counts...blah, blah, blah, but I have decided the king kong side effect is bloating. No it is not just tee-hee, hee I have slipped a little gas. It is like I am so bloated I cannot get my pants on. Terrible, it has only been five days since I could wear my jeans, loose mind you, what the crap?!??!??! My new wardrobe, comfortable as it is, is pajama pants and t-shirts. Yeah, I joked with Craig I am going to have to buy all new clothes if this doesn't go away, and I just plan to go to the wal-mart and get tight yoga pants and little baby tees that don't cover my new gut. The actual side effect I am experiencing is possibly related to a new chemo drug, which here is what it says: call your care manager if you experience an increase in girth (awesome), or it could be related to another GI incident I had, and the drugs they gave me afterwards, OR in the fun way I like to roll all three!
So, let me catch you all up. I have had some stuff (crap) going on. In late September I was hospitalized with what was discovered to be an upper GI bleed, those side effects equaled Sharon just feeling really bad and having to lay down a lot, with all her nice family having come to visit. At that time I received my first transfusions of blood, and an extended three day vacation at the hospital, but all was well, and within a week I was back as regularly scheduled to the CTCA for scans, plans, and chemo.
The trip to the CTCA was more eventful than I would have liked as apparently some cancer was confused and the current chemo I was on didn't faze it anymore, so there was a "mixed response." Sucky. After talking to the oncologist and we being his prodigy patient and her husband, we all came quickly to the decision to make a change to new and fun drugs. I have now changed regiments. That was just last week on Thursday (10.21) which seems forever ago now. I actually was pretty excited about one of the drugs he picked because I had been on it before and it was awesome, so I expect the same thing to happen now. So I got the new chemo and it actually is pretty nice too that they don't take long at all to infuse.
The latest fun was on Saturday (10.23). I got up and kept feeling like I was going to pass out, maybe it was nerves right before the OSU game? Hmmm.... but no. I had some breakfast and thought that would help, nope. Plus my body was telling me for sure something was wrong, like the last time I went to the hospital, we knew I was probably bleeding again, so off to the hospital we went. Funny, after you do this a couple times, we packed. I had a bag of stuff so that I was prepared. Total mess. We got to the ER, I couldn't even walk my dang self in because of my pass out problems, that was weird not to be able to actually take myself somewhere. Turns out that during the OSU games in Columbus the ER is pretty empty, plus when you act all weird because you are going to pass out you get lots of attention. Anyway, they figured the bleed, but before they addressed it, fluids, blood, GI scope and some fixin' they decided to do the worst thing I have experienced, (this is still better than the bloat because it was over in 5 minutes). They took this thing to prove I was bleeding into my stomach or in my stomach by shoving this piece of crap up my nose and down my throat!!!! They promised to get the GI doctor to fix the bleed if this happened and I was on board with that. Turns out they are not ER people of their word, no scope that day. They took that dang thing out pretty fast though and probably irritated the bleed I had because later we learned it was in the throat. Ugh, just thinking about it now, totally gross! They did do the scope on Sunday, in the meantime I received blood, platelets, fluids, antibiotics...blah, blah, blah... and was super doctored. I was on a floor they were watching me close, all hooked up to monitors, not allowed out of bed for anything. I learned that yellow socks with the grippies (which my question was why are they on the top and bottom of the feet, what the crap was that all about) meant fall risk. I felt like I was on the super old person sick floor which sucked! Anyway...after Sunday things certainly settled down and I felt much, much, better. Then it just became a matter to ensure I was stable enough to go home, it was a bit complicated because my platelets and red blood fluctuated as it should have because I had just received the chemo, so Tuesday it was looking good for going home, but I had to wait till Wednesday. We got back after 6:00. Long days.
I have to give kudos to my husband Craig though. He worked the whole time, had to run all around to take care of the dogs and was visiting me. I think it is also hard to have to watch the person you love go though hard stuff, but he always brings encouragement and stability to the situation(s). I am always amazed at his faith because it is simple and final. He decides that something will be good and just takes good faith in it right away, like changing drugs. He never seems to return to that decision to wonder about it or anything.
Anyway...where I am now is working on growing some platelets and just recovering from sitting around all day. I have to go to my family doctor next week for a check up and then we all can decide when I am well enough to return to chemotherapy, which I failed to mention will be two weeks on one week off like before but I have to travel once a week for the infusions, that will be the main change, unless this bloat business doesn't get taken care of and then I will be needing the doctor and a drug switch!
So, let me catch you all up. I have had some stuff (crap) going on. In late September I was hospitalized with what was discovered to be an upper GI bleed, those side effects equaled Sharon just feeling really bad and having to lay down a lot, with all her nice family having come to visit. At that time I received my first transfusions of blood, and an extended three day vacation at the hospital, but all was well, and within a week I was back as regularly scheduled to the CTCA for scans, plans, and chemo.
The trip to the CTCA was more eventful than I would have liked as apparently some cancer was confused and the current chemo I was on didn't faze it anymore, so there was a "mixed response." Sucky. After talking to the oncologist and we being his prodigy patient and her husband, we all came quickly to the decision to make a change to new and fun drugs. I have now changed regiments. That was just last week on Thursday (10.21) which seems forever ago now. I actually was pretty excited about one of the drugs he picked because I had been on it before and it was awesome, so I expect the same thing to happen now. So I got the new chemo and it actually is pretty nice too that they don't take long at all to infuse.
The latest fun was on Saturday (10.23). I got up and kept feeling like I was going to pass out, maybe it was nerves right before the OSU game? Hmmm.... but no. I had some breakfast and thought that would help, nope. Plus my body was telling me for sure something was wrong, like the last time I went to the hospital, we knew I was probably bleeding again, so off to the hospital we went. Funny, after you do this a couple times, we packed. I had a bag of stuff so that I was prepared. Total mess. We got to the ER, I couldn't even walk my dang self in because of my pass out problems, that was weird not to be able to actually take myself somewhere. Turns out that during the OSU games in Columbus the ER is pretty empty, plus when you act all weird because you are going to pass out you get lots of attention. Anyway, they figured the bleed, but before they addressed it, fluids, blood, GI scope and some fixin' they decided to do the worst thing I have experienced, (this is still better than the bloat because it was over in 5 minutes). They took this thing to prove I was bleeding into my stomach or in my stomach by shoving this piece of crap up my nose and down my throat!!!! They promised to get the GI doctor to fix the bleed if this happened and I was on board with that. Turns out they are not ER people of their word, no scope that day. They took that dang thing out pretty fast though and probably irritated the bleed I had because later we learned it was in the throat. Ugh, just thinking about it now, totally gross! They did do the scope on Sunday, in the meantime I received blood, platelets, fluids, antibiotics...blah, blah, blah... and was super doctored. I was on a floor they were watching me close, all hooked up to monitors, not allowed out of bed for anything. I learned that yellow socks with the grippies (which my question was why are they on the top and bottom of the feet, what the crap was that all about) meant fall risk. I felt like I was on the super old person sick floor which sucked! Anyway...after Sunday things certainly settled down and I felt much, much, better. Then it just became a matter to ensure I was stable enough to go home, it was a bit complicated because my platelets and red blood fluctuated as it should have because I had just received the chemo, so Tuesday it was looking good for going home, but I had to wait till Wednesday. We got back after 6:00. Long days.
I have to give kudos to my husband Craig though. He worked the whole time, had to run all around to take care of the dogs and was visiting me. I think it is also hard to have to watch the person you love go though hard stuff, but he always brings encouragement and stability to the situation(s). I am always amazed at his faith because it is simple and final. He decides that something will be good and just takes good faith in it right away, like changing drugs. He never seems to return to that decision to wonder about it or anything.
Anyway...where I am now is working on growing some platelets and just recovering from sitting around all day. I have to go to my family doctor next week for a check up and then we all can decide when I am well enough to return to chemotherapy, which I failed to mention will be two weeks on one week off like before but I have to travel once a week for the infusions, that will be the main change, unless this bloat business doesn't get taken care of and then I will be needing the doctor and a drug switch!
Sunday, September 12, 2010
Another chemo, another day
We are back from Philly! Thank goodness. I do not like to spend any more time than I have to there. It is too bad because I like history and the neat things there are in the city, but it will always be the chemo/hospital/CTCA city to me.
The test went well!!!! It was so nice to have another appointment confirm that these are the drugs and they seem to be operating effectively and quickly. I even dared to ask the oncologist how much longer do I have to take this mess? Ok, so here is what he said, I am sort of nervous to even think of saying it out loud because we are prone to things changing, and not for the better most times, but I am excited. So he said at least four more, so if the drugs do like they have been I think it is totally reasonable to think four more treatments could be it. In this "set" of chemotherapy there are 6 treatments, so I just finished 2, and I received the IV portion of the chemo on Friday. I will then complete the rest of the 3rd treatment with two weeks of pill chemo. That means 3 more. The idea of being free and complete of drugs, growing hair, not having so much dry skin that I feel like sandpaper, is just wow. This whole thing started last July and so, so much has happened since then, so many things I could not have foreseen (surgery, chemo, chemo, chemo) that a possible end date is so uplifing to my spirit. Hopefully the blessings of health continue and there is no question 3 more treatments will be all that is needed.
Nothing else really happened. I still don't like the port. It was weird to have it "accessed" for the first time. They actually stick this needle right into the middle of the bumped up port which I didn't realize (gross) plus it stuck out. It was sort of like being stabbed. Take a deep breath, poke! Ugh. Oh well, maybe only 3 more pokes!
I am feeling some side effects today and yesterday. It is like you had a super hard weight training workout and your muscles are sore, but if you press on the muscles too they are sore. That's not really too bad, plus it passes as I get farther away from when they administered the IV drugs. I should get my chemo pills monday then I will start trying harder to keep all my skin from flaking off. It is really weird because the dryest part has been on my face and it is flakey skin (sorry, I know gross) around my eyes and under my brows, and it is getting worse moving to around my nose and mouth. People that don't know me must think what the heck is wrong with that lady? And oh well to that too, I will take this over the face and mouth rash any day.
The test went well!!!! It was so nice to have another appointment confirm that these are the drugs and they seem to be operating effectively and quickly. I even dared to ask the oncologist how much longer do I have to take this mess? Ok, so here is what he said, I am sort of nervous to even think of saying it out loud because we are prone to things changing, and not for the better most times, but I am excited. So he said at least four more, so if the drugs do like they have been I think it is totally reasonable to think four more treatments could be it. In this "set" of chemotherapy there are 6 treatments, so I just finished 2, and I received the IV portion of the chemo on Friday. I will then complete the rest of the 3rd treatment with two weeks of pill chemo. That means 3 more. The idea of being free and complete of drugs, growing hair, not having so much dry skin that I feel like sandpaper, is just wow. This whole thing started last July and so, so much has happened since then, so many things I could not have foreseen (surgery, chemo, chemo, chemo) that a possible end date is so uplifing to my spirit. Hopefully the blessings of health continue and there is no question 3 more treatments will be all that is needed.
Nothing else really happened. I still don't like the port. It was weird to have it "accessed" for the first time. They actually stick this needle right into the middle of the bumped up port which I didn't realize (gross) plus it stuck out. It was sort of like being stabbed. Take a deep breath, poke! Ugh. Oh well, maybe only 3 more pokes!
I am feeling some side effects today and yesterday. It is like you had a super hard weight training workout and your muscles are sore, but if you press on the muscles too they are sore. That's not really too bad, plus it passes as I get farther away from when they administered the IV drugs. I should get my chemo pills monday then I will start trying harder to keep all my skin from flaking off. It is really weird because the dryest part has been on my face and it is flakey skin (sorry, I know gross) around my eyes and under my brows, and it is getting worse moving to around my nose and mouth. People that don't know me must think what the heck is wrong with that lady? And oh well to that too, I will take this over the face and mouth rash any day.
Tuesday, August 17, 2010
My very own outlet
Yep, that's what I feel like I have with the newly placed port. BLEH. I hate the idea of something being inserted under my skin that I can feel. Gross. It made the chemo go better for me, but I also think that it is easier for the CTCA, which I really don't care about. :) It is all about me. It was worth it to not have that terrible burning in my arm after wards. The surgeon told me after out chat about the procedure that I would think to myself that I would wish I had done this a while ago. Wrong-o! I do what I have to do, but I much prefer to me all myself without plastic under the skin plugged into a super vein. If I could have it out tomorrow I would. Well if that wasn't running on about stuff I really can't change. :)
I do have some good news to share which I am super excited about, my new drug cocktail is doing super super super awesome! The way that we can tell is they did a tumor marker (measured through a blood draw) and it went down a bunch! That is a huge blessing and relief. I received another dose of it yesterday and am taking my at home chemo so I am looking forward to the next appointment because we get to see the progress (please continue!) on a PET. Then maybe we can talk about how long to be on drugs AND how long to have the port.
It has felt like a long time since we have had good news. Last year in July the bad news started and just kept on rolling. Sometimes I can't believe it has been a year that we have struggled through this setback. However, I am very hopeful for this to be the last of the cancer and turn it out for good! Thanks friends for your prayers and for your support. :)
I do have some good news to share which I am super excited about, my new drug cocktail is doing super super super awesome! The way that we can tell is they did a tumor marker (measured through a blood draw) and it went down a bunch! That is a huge blessing and relief. I received another dose of it yesterday and am taking my at home chemo so I am looking forward to the next appointment because we get to see the progress (please continue!) on a PET. Then maybe we can talk about how long to be on drugs AND how long to have the port.
It has felt like a long time since we have had good news. Last year in July the bad news started and just kept on rolling. Sometimes I can't believe it has been a year that we have struggled through this setback. However, I am very hopeful for this to be the last of the cancer and turn it out for good! Thanks friends for your prayers and for your support. :)
Monday, August 9, 2010
Wow, has it really been that long since I have updated the blog?! What a slacker!
Well, the last time I updated I had the last of the chemoembolizations, thank goodness! Since then, I have had the same chemo cocktail that I had before the embolizations, it lasted for about three weeks, then I had a week off. Not too terrible. There were some side effects but nothing too out of control. Then we went to the CTCA and they can tell if I am still making cancer enzymes through a blood test and it really didn't seem to indicate the super awesome-ness that should have been there. Crap! So new chemo cocktail was prescribed for July 26th, I have just finished that today. I have one part iv chemo and the other part pill chemo. I have had the take home so far it is ok. I will be going back Monday for some more chemo and a port. Who wants more procedures and scars, I do!
The first treatment of the new iv drug was not fun. It burned the veins in my arm terribly and the burning and tingly vein feeling did not go away for a long time. It is my bet that I get at least 5 more of these treatments, I cannot imagine having pain while getting chemo and then going home with it. It probably didn't help that I fell asleep and thought I was all good, and woke up to super tingly veins, but too bad. There was no time that day for a port and I was going home with that chemo administered.
Other highlights of the past couple of weeks include: 1. we met the most horrible "helpful" nurse that works for my oncologist, totally messed up our schedule and didn't listen (I cannot even explain how awful it was). We actually complained officially about her. 2. My hair has not all fallen out. 3. I am having weird side effects, like my fingertips are super sensitive and the palms of my hands are like thin skin and cracking, so weird. That means I cannot even open any plastic toppers because it hurts! What a mess! Other weird side effects, there can be super sensitivity to cold on this regiment, like your throat and face. For example ice water could make pain in your throat for a while. Fortunately I do not have that but I do have a bit of cold sensitivity for ice water. Not enough to curb eating ice cream, whew!
I think that is all the exciting news. I do have to say I am feeling better so to me that means that the chemo and chemoembolizations are doing their good jobs.
The first treatment of the new iv drug was not fun. It burned the veins in my arm terribly and the burning and tingly vein feeling did not go away for a long time. It is my bet that I get at least 5 more of these treatments, I cannot imagine having pain while getting chemo and then going home with it. It probably didn't help that I fell asleep and thought I was all good, and woke up to super tingly veins, but too bad. There was no time that day for a port and I was going home with that chemo administered.
Other highlights of the past couple of weeks include: 1. we met the most horrible "helpful" nurse that works for my oncologist, totally messed up our schedule and didn't listen (I cannot even explain how awful it was). We actually complained officially about her. 2. My hair has not all fallen out. 3. I am having weird side effects, like my fingertips are super sensitive and the palms of my hands are like thin skin and cracking, so weird. That means I cannot even open any plastic toppers because it hurts! What a mess! Other weird side effects, there can be super sensitivity to cold on this regiment, like your throat and face. For example ice water could make pain in your throat for a while. Fortunately I do not have that but I do have a bit of cold sensitivity for ice water. Not enough to curb eating ice cream, whew!
I think that is all the exciting news. I do have to say I am feeling better so to me that means that the chemo and chemoembolizations are doing their good jobs.
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